by Tim O'Grady | Nov 4, 2014 | Updates
What a month! Whilst the number of seizures Toby has had has reduced the length and severity increased dramatically. The poor little boy had 3 seizures (one every seven days almost) that lasted over an hour and several around 20mins, the longest being 71 minutes which...
by Tim O'Grady | Nov 2, 2014 | News & Events
A good ‘Dravet’ friend of ours Rebecca had told us about a charity called Brainwave that works with children with neurological issues to create physical and mental development plans, her daughter, the gorgeous Neve has regular contact with Brainwave and it...
by Tim O'Grady | Oct 30, 2014 | Dravet Links and Info
A video from Jean’s for Genes featuring Galia and Arlo. http://www.jeansforgenesday.org/howyourmoneyhelps/thedifferenceyouhavemade/dravetsyndromefamiliesunite...
by Tim O'Grady | Oct 16, 2014 | Fundraising
A lot of friends and family have helped to raise thousands of pounds for Dravet UK, the charity that supports us and other families. The charity works hard to promote awareness of Dravet Syndrome and has produced some excellent leaflets that help us when talking to...
by Tim O'Grady | Oct 4, 2014 | News & Events, Updates
September has been a mixed bag for Toby and us on many fronts. We’ve been trying to get Toby into a nursery so that he can be around other children to interact and learn like most other children do. Sadly due to his condition it’s a lot harder than you...
